Monday, March 15, 2010

What amazes me is the lack of lymphedema talk. Or maybe it's just me. But even here, in Blogger, lymphedema has that little red sqwiggly line underneath it like it's misspelled. Think about that. If you typed in "cancer" and the little red sqwiggly line popped up like you'd made the word up entirely, wouldn't you feel a little weird? Like maybe this thing that is affecting your life so much is somehow unknown to other people? Regular people don't even know what it is, and yet, if you've had cancer, you're probably dealing with it every single day. I get emails all the time asking me if I have any advice on how to deal with it, or if I know anyone who does. It is, without a doubt, the one thing that I took from having cancer that I still have to deal with day in and day out. The pain or discomfort from it is consistent and almost daily. Lymphedema of the groin is right up there with bamboo shoots under the finger nails if you ask me, although I can't really confirm that one from personal experience. Just trust me, ok? It hurts. Like a lot. I'm sure no one wants to talk about this, but just give it a thought for a moment: major swelling of your groin. Ew. Lymphedema is the one thing that I have to be most careful with in my regular life.

After I was found NED, like most people who come into remission or NED status, the doctor sort of told me, "Good job. Now go back to your life and enjoy it and when the cancer comes back, we'll deal with it." If you've ever been in that position, it's freaky to say the least. Like you are Ferris Bueller and you've gotten away with a whole day off. Or even weirder. What's basically happened is your whole life has somehow changed and yet you don't even really know the extent of how it has changed yet. But your body for sure has changed, and so you begin your new life by dealing with that. But where is the lymphedema help? I mean, it's got to be out there, right? I've been digging and hunting and reading for almost 5 years, and I feel like I've got a pretty good understanding of how lymphedema effects my body, but I still can't tell you, after all my research, much about the condition overall. It's a strange

vague thing, (kinda like Howard the Duck), except even after following all the prescribed methods of fixing it, I've found that most people in the professional field have no idea what to do

with it (again, kinda like Howard the Duck). I've been Rx'ed Lasix for it, for example (bad idea), and have been given MLD (manual lymph drainage) massages by people who had no idea how to keep a bandage on my leg. I mean, without exaggeration, it would literally fall off by the time I walked to the car. A doctor once recommended I start cycling after my surgery because it would be very low impact on my body and really help with my lymphedema. A week later he takes a iliac node from my abdomen. Did he have no idea how much abdominal swelling would take place? Lymphedema does occur there, after all, and is agitated by bending over for any period of time. Or did he just not know what position you sit in on a bike? I mean really. It's infuriating to think that an entire medical field is clueless about this.

On the other hand, I HATE when people complain about something and go on and on without ever offering a solution or lifting a finger to try to fix it. And so, I have tried, and documented fairly consistently, what works for me. What I'm wondering is: would it work for you? I'm looking for others who would be willing to share about their experiences and how they've dealt with the condition, and possibly give feedback on techniques I've used (like whirlpools). Are you game?

Another thing I'm trying now is different types of workouts. Exercise definitely helps, but again, it is a slow, tedious process of figuring out what, how much, and when to do it. Too much and you're in a world of pain, too little and you'll swell up suddenly over night. So my new thing I'm going to try is yoga. I won't be consistently updating you, but I'll see if it helps.

I guess this was a venting post, but I could certainly use your help in helping all those people out there that are trying to deal with this. AW. We're making the world a better place. :)

Imerman Angels

In Loving Memory of

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.- Henri Nouwen